Washington, DC Update 10/25/23

The search for a speaker of the House continues. In the interim, Congress appears to be going about their business- to an extent. Remember that the budget approval is looming (11/17/23 deadline) and until a Speaker is elected, a vote on the appropriations bill- or any others- cannot be made.

Transportation Assistance for Individuals with Disabilities Act:

Representative Wilson (D-FL-24) has introduced the Transportation Assistance for Individuals with Disabilities (TAID) Act (H.R 5859) that directs the Secretary of the U.S. Department of Transportation to award 10 grants of $110,000 annually for 5 years to establish a protection and advocacy system to support accessible transportation. These programs will be part of the existing Governor-designated protection and advocacy agencies. The bill has bipartisan support, and there is no Senate companion yet.

Appendix K: Important Timeline approaching!

During the COVID-19 pandemic, states used several types of authorities, including disaster-relief state plan amendments, 1115 waivers, and Appendix K changes to 1915c waivers in responding to the disaster. Changes made using the Appendix K authority will expire within 6 months of the PHE ending (November 11, 2023). Examples of Appendix K uses include changing processes for determining eligibility, authorizing services, and paying providers; expanding provider qualifications or which providers are eligible to be paid; and expanding the service delivery models. 39 states allowed for paid family caregiving through Appendix K during the PHE.

Important note: On August 2, 2023, CMS indicated that:

Appendix K flexibilities currently approved to end six months after the expiration of the PHE may be extended if the state takes action by November 11, 2023, to incorporate desired Appendix K provisions into underlying HCBS programs. The expiration extension allows states to avoid a lapse in approved provisions and only applies to Appendix Ks with flexibilities that are incorporated into underlying section 1915(c) waiver programs. The applicable Appendix K will remain in effect until the effective date of the section 1915(c) waiver action (amendment or renewal).

In this same letter, CMS stated: CMS notes that not all approved Appendix K flexibilities may be incorporated into underlying HCBS waivers, and states are under no obligation to amend their waivers to continue Appendix K flexibilities beyond the expiration of the Appendix K. However, states are strongly encouraged to consult with their beneficiary, provider, and stakeholder communities to determine which relevant Appendix K flexibilities would be beneficial to continue.

What happens to the Appendix K changes now that the PHE is over?

Some changes have ended already, others have been transitioned to permanent authorities (by approved application or incorporated into underlying 1915c programs), and some will end soon.

How do you know what Appendix K changes were made in your state during the PHE? This Medicaid.gov link gives an overview of the tool, and also has a searchable table at the bottom to locate information about your state.

For status of unwinding of Appendix K in your state, check your Medicaid website.

For more information and background on Appendix K during the PHE- check out this Kaiser Family Foundation article that includes tables and data.

Administration for Children and Families (ACF): Kinship Care

The final rule announced by ACF makes it easier for family members such as grandparents, aunts, and uncles to become caregivers when a child in their family enters foster care. Previously, all foster family homes were required to meet the same licensing standards, regardless of whether the foster family home was a kin or non-kin placement, creating unnecessary barriers to kinship care. 

This new rule, which takes effect November 27, allows child welfare agencies to adopt simpler licensing or approval standards for all kin foster family homes. The rule also allows states to provide additional flexibilities, such as extending the age limits for kinship foster care providers. This will allow more older adult family members to become caregivers when a child in their family enters foster care.

CMS: Final rule Medicaid and CIHP quality measures

CMS released a final rule to require reporting of standardized quality measures in Medicaid and the Children's Health Insurance Program. Starting in 2024, states will need to report three different quality measure sets annually:

• Core Set of Children’s Health Care Quality Measures for Medicaid and CHIP,
• Behavioral health measures on the Core Set of Adult Health Care Quality Measures for Medicaid, and
• Core Sets of Health Home Quality Measures for Medicaid.

States will be required to report data for more measures over time as well as to separating that data out by categories such as age or disability. This will help CMS identify opportunities to improve the provision of high-quality person-centered health care and reduce health disparities among the millions of people enrolled in Medicaid and CHIP.

HUD: Expanded Access to Affordable Housing for People with Disabilities

The U.S. Department of Housing and Urban Development’s Office of Multifamily Housing announced that $212 million in funding is available to expand the supply of affordable housing and supportive services for very-low and extremely-low-income persons with disabilities. The funding is available to participants in the Section 811 Supportive Housing for Persons with Disabilities program, which helps develop, subsidize, and provide supportive services for rental housing to meet the needs of this vulnerable population.

Through the Section 811 Capital Advance/Project Rental Assistance Contract (PRAC) program, $106 million in capital advances can be used for the development of new or rehabilitation of existing supportive housing, along with project rental subsidies to keep homes affordable.

The Section 811 Project Rental Assistance (PRA) provides $106 million to state housing and other agencies for project rental assistance to cover the difference between the tenants’ contributions toward rental payments and the HUD-approved rent for the property for eligible tenants with disabilities.

DOT: Public Awareness Campaign- Rights of Travelers with Disabilities

The US Department of Transportation is partnering with airlines, airports, ticket agents, and disability organizations in this campaign to improve public awareness of the Bill of Rights and ensure that travelers with disabilities know their rights by linking to the Bill of Rights video on their respective websites and by sharing the video on social media. This link to awareness campaign gives overview, link to video, link to bill of rights, and how to file complaint.

HHS: Privacy, Protected Health Information and Telehealth Resources

The Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services (HHS), issued two resource documents to help explain to patients the privacy and security risks to their protected health information (PHI) when using telehealth services and ways to reduce these risks.

The first resource is for health care providers on “Educating Patients about Privacy and Security Risks to Protected Health Information when Using Remote Communication Technologies for Telehealth.” Although health care providers are not required by the HIPAA Rules to provide this education, the resource supports the continued and increased use of telehealth by providing information to help health care providers who choose to discuss telehealth privacy and security with patients. The resource provides suggestions for discussing:

• Telehealth options offered
• Risks to PHI when using remote communications technologies
• Privacy and security practices of remote communication technology vendors
• Applicability of civil rights laws

OCR also issued a resource for patients called “Telehealth Privacy and Security Tips for Patients.” This resource provides recommendations that patients can implement to protect and secure their health information such as:

• Conduct telehealth appointment in a private location
• Turn on multi-factor authentication if available
• Use encryption when available
• Avoid public Wi-Fi networks

“Telehealth is a wonderful tool that can increase patients’ access to health care and improve health care outcomes,” said OCR Director Melanie Fontes Rainer. “Health care providers can support telehealth by helping patients understand privacy and security risks and effective cybersecurity practices so patients are confident that their health information remains private.”

The Guidance on Educating Patients about Privacy and Security Risks to Protected Health Information when Using Remote Communication Technologies for Telehealth may be found at https://www.hhs.gov/hipaa/for-professionals/privacy/guidance/resource-health-care-providers-educating-patients/index.html.

The Guidance on Telehealth Privacy and Security Tips for Patients may be found at https://www.hhs.gov/hipaa/for-professionals/privacy/guidance/telehealth-privacy-security/index.html.

HAFC: 2 Proposed Rules

Proposed Rule: Supporting LGBTQI+ youth

ACF also released a proposed rule that would require that child welfare agencies ensure each child in their care who identifies as LGBTQI+ receive a safe and appropriate placement and services that help them thrive. The proposed rule would require that caregivers for LGBTQI+ children are properly and fully trained to provide for the needs of the child related to the child’s self-identified sexual orientation, gender identity, and gender expression as well. These changes are important because LGBTQI+ youth face worse outcomes in foster care, including poor mental health, higher rates of homelessness, and discrimination just because of who they are.

Comments can be submitted online or by email until November 27.

Proposed Rule: Access to legal representation

Finally, ACF released a proposed rule that would expand access to legal representation for children in foster care, parents, and kinship caregivers by allowing state and tribal child welfare agencies to use federal funds to provide legal services.

The rule would allow child welfare agencies to use federal funds to help cover the costs of providing access to an attorney during civil legal proceedings when doing so would support a child’s needs - for example by helping to secure stable housing, securing public benefits such as Medicaid, or establishing custody or guardianship to prevent the unnecessary removal of a child from the home.

Children and parents with disabilities are overrepresented in the foster care system. Children with disabilities are also institutionalized at higher rates and for longer periods of time than children without disabilities and parents with disabilities have high rates of termination of parental rights. Providing access to legal representation can help keep these families together and provide them with supports they need.

Comments can be submitted online or by email until November 27.

AAP: NEW Medicaid Policy Statement

The American Academy of Pediatrics released a new policy statement- Medicaid and the Children’s Health Insurance Program: Optimization to Promote Equity in Child and Young Adult Health calls for sweeping changes to Medicaid and the Children’s Health Insurance Program (CHIP) to provide more consistent and equitable coverage and ensure children can access the care they need to grow and thrive. The statement lays out a long-term vision, along with interim strategies, to build a more equitable health care system and improve access to health care for all children. For example, the AAP proposes automatic enrollment of newborns in a single health insurance program (combining Medicaid and CHIP) with an option to opt out if families have other health insurance, such as employer-provided insurance. The policy statement further calls for changes to make children's access and care more consistent across states, mitigating many existing geographic and racial disparities. In so doing, the statement recognizes the central role of Medicaid and CHIP in improving child health and reducing racial disparities and is based on the core value that all children should have their health needs fully met no matter where they live, regardless of family income or color of their skin, or what their immigration status may be. America cannot afford to leave any child behind.

OP-ED: Children’s Mental Health Crisis is Not Over

Last week, the Presidents of the American Academy of Child and Adolescent Psychiatry, American Academy of Pediatrics, and Children’s Hospital Association published an op-ed, “The Youth Mental Health Emergency Isn’t Over. Government Must Act Now.” The op-ed marked the second anniversary of the National Emergency Declaration in Child and Adolescent Mental Health.

KFF Issue Brief: Increased Payment Rates in HCBS

This Kaiser Family Foundation issue brief describes states’ ongoing efforts to respond to the workforce crunch and how they pay HCBS workers, which are central challenges in ensuring that HCBS services are accessible to the 4 million Medicaid enrollees who use them. The data come from the 21^st KFF survey of officials administering Medicaid HCBS programs in all 50 states and the District of Columbia, which states completed between May and August 2023. 

All surveyed states reported shortages of care workers and most (43 states) experienced permanent closures of providers over the last year. Staff shortages were most common among direct support professionals, personal care attendants, nursing staff, and home health aides. Even with increased payment rates, among the 34 states that reported time-based payment rates for personal care providers, 20 pay less than $20 per hour. Based on survey results, KFF estimates that median Medicaid payment rates to home- and community-based service providers are $19 per hour for personal care providers, $28 for home health aides, and $43 for registered nurses providing home and community-based care. There is considerable variation in provider payment rates and state officials say it is difficult to report these numbers.

Blog: Trauma Informed Physical Examinations

In a new blog for Bedsider Providers, Child Trends expert Jenn Rogers shares guidance for clinicians seeking to provide trauma-informed physical examinations. The guide, developed by the National Coalition for Sexual Health and the Clinical Training Center for Sexual and Reproductive Health, provides action steps and scripts for before, during, and after a clinical visit.  

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Family Voices is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families--including those of cultural, linguistic and geographic diversity--in order to improve healthcare services and policies for children.